Behind The Headline: Barnsley Hospital NHS Foundation Trust and MSP

"Patient, 34, DIES after judge ruled he had right to refuse operation because he did not want to live with a permanent stoma bag." (Daily Mail, 10 June 2020)

Some of you may have seen this headline earlier this month. A heart-breaking story particularly for the stoma community and I know I'm not the only one who felt affected by it. I have chosen to write about it here because processing a headline like was an important step in my recovery.

The lawyer in me wanted to instantly pick apart the judgement but I couldn't bring myself to read it for a while. Although I have been building my confidence in sharing my new normal, it really knocked the wind out of my sails to think that there might not be anymore to this case than a young man who wanted to end his life rather than live life as an ostomate. This was not all there was to it, so I want to summarise the judgement for those who have not read it.

MSP was 34 and had been suffering with abdominal problems for more than a decade. He had open surgery for a gastric ulcer in July 2013 and was ventilated afterwards in ICU. In October 2019 he had stoma surgery and he "loathed" life with a stoma. He had a prolapse of his stoma in February 2020 which he found very distressing. On 4 February 2020 he wrote an Advance Directive which said that he refused the following (amongst many other things), even if his life was at risk:

- the formation of a stoma that is expected to be permanent or with a likelihood of reversal of 50% or under; or

- the requirement for ongoing medical treatment that will prevent him from living independently, either long term or indefinitely.

MSP had his stoma reversed in May 2020. He went home after surgery but returned to hospital a few days later with sepsis. His small bowel was obstructed and his condition was life threatening. He needed another stoma formation immediately to survive. He consented to the operation which was a concern to his family and doctors who knew his consent was inconsistent with everything he had said before. It is thought that he may have consented because the surgeon (wrongly) expressed some optimism that the stoma could be reversed. Unbeknown to MSP when he consented, the position was that the stoma would be permanent and he would need to be supported with total parenteral nutrition (artificial feeding also known as TPN) with only a speculative possibility of ever eating again. MSP went into a coma and the hospital applied to the court to make an urgent decision on whether to withdraw life support, allowing him to die.

The judge ruled that the hospital could withdraw life support and move to palliative measures. He thought that there was little doubt that if MSP had known the stoma was permanent, then he would have rejected the procedure and chosen to die. Importantly, MSP had been equally clear in rejecting anything which artificially prolonged his life, including TPN. Although his Advance Directive was not drafted correctly, it still carried significant weight and represented a clear expression of his wishes and feelings and it did not stand alone in evidence. It was reinforced by his doctors, his parents, and his step-sister, each of whom had no doubt that MSP would not want to live either with the stoma or TPN and the combination of both would be unbearable for him. The judge was satisfied that withdrawing treatment was what MSP would have wanted. However heartbreaking, when MSP wrote his Advance Directive, he made a calculated decision that life in those circumstances was not what he wanted and we all have the right to decide what we want for our future.

I have mixed feelings about MSP's story. I am sad that he could not adapt to life with a stoma. I am comforted to know that although the stoma was a big factor, it was not the only factor. He was facing not only a permanent stoma but also artificial feeding, potentially for the rest of his life, which carries with it all sorts of risks, complications and restrictions. I understand why he would not want to live like this. I believe that we should have personal autonomy over the medical treatment we receive and over our futures. Aside from this, he was haunted by ICU syndrome (similar to PTSD) and he had battled other demons in his lifetime, including self-harm, bipolar (which had been controlled with medication) and excessive drinking. His father feared he would take his own life if he survived. We are all affected differently by a stoma formation, physically and emotionally and having demons like this behind it all must have made it so much harder to process.

There is a lot more to this decision than a stoma and that's my message to myself this month. MSP did what many of us with IBD try to do, that is to conceal his symptoms. He wanted to present himself to the world as competent and active, so he concealed his stoma from everyone but the 3 people closest to him. Because of this, I am sure that he did not intend his story to have the impact that it did. Within the stoma community, his story was a catalyst for so many messages of love and support and for raising awareness of what it is like to live as an ostomate. There is still a long way to go to get rid of stoma stigma and this case has not helped that. I'm not sure it will ever disappear completely but I hope that ostomates continue to share more of the things that we can do with a stoma and the life that it gives us, rather than takes away.

I will leave you with a message from the stoma community, that is, having a stoma is not a life sentence and we are not alone.

Love Me &

My Friend Wendy.

**If you are affected by MSP's story, please know that help is out there. Please reach out to your doctors/nurses or charities such as Crohn's and Colitis UK.**